I am passing on this letter I recieved. ... Hi Ms. Young, I came across your FEVR website and wanted to update you on our new Retina Institute at Childrens...
27
James Wilkins
jameswilkins
Mar 12, 2008 5:19 pm
Promising news from a group seeking to provide relief from retinal diseases: http://news.bostonherald.com/news/regional/general/view.bg?articleid=1078909"...
28
darryl.beales
Jun 5, 2008 10:56 am
Hi We are from Australia and our daughter Rose has fevr (most probably a ressesive form as there is no family history of anything similar in either family)...
29
gwkuma007
Jun 5, 2008 12:30 pm
Hi Kerrie, We have a daughter just a little younger than yours. She has FEVR in both eyes, but more noticeably in her left. At 1 y.o. she had a scleral buckle...
30
James Wilkins
jameswilkins
Jun 6, 2008 1:09 pm
We have an 8 year old son who was diagnosed with FEVR at age 4. He had laser treatment around his 5th birthday to zap rogue blood vessels in his eyes (the...
31
kelley242424
Jun 15, 2008 12:53 am
My daughter has had laser treatment in one eye for her FEVR. It was relatively painless for her and she has not needed any follow-up. ("Relative" to cryo...
32
chrreed
Jun 18, 2008 3:09 am
Hi to All- It's Christina, mother to Hailey and Hannah who have FEVR, and I have a question for everyone. I have a genetic condition called Factor V Leiden...
33
Jane Young MS
young1_fevr
Jun 22, 2008 4:07 pm
Note to all who are looking for place to find latest FEVR information. Go to website http://www.highbeam.com Here is link for FEVR search ...
34
Jane Young MS
young1_fevr
Jun 29, 2008 4:06 pm
Subject: Translators Wanted for fevr.net Website From: Jane Young, Host for http://fevr.net If anyone out there in cyberspace writes another language and would...
35
pippa.milles
Sep 2, 2008 8:16 pm
Hi Luke & Manda! Thanks for your messages. We are another FEVR family in the UK. My son Arthur is nearly 3 years old and has (we think) the recessive form of ...
36
Esther
big_big_eye
Apr 2, 2009 3:44 am
Hi, my son is 4-year old who has just diagonised to have X-linked Juvenile Retinoschesis. I just want to know if it is same as FEVR? We are in Hong Kong and...
37
Darryl Beales
darryl.beales
Apr 2, 2009 9:21 am
Hi This disease is not related to FEVR. I found a group of people when I searched with the same disease http://www.makingcontact.org/index.php?ci=1738 I can...
38
Esther
big_big_eye
Apr 3, 2009 3:04 am
Thanks a lot Kerrie. Thanks for giving me the link to contact the other people who have the same disease. May God bless you and also the other kids who have...
39
gwkuma007
Apr 3, 2009 7:14 am
You are fortunate to be in HK where I'm quite sure you can find a good retinal specialist. Our daughter was diagnosed with FEVR while we were living in...
40
Jane Young MS
young1_fevr
Jun 4, 2009 6:41 pm
I have received an E-mail from Dr. Tsilou, head of the National Institute of Health (NIH) Eye Clinic that the FEVR genetic clinical study is ending due to lack...
41
gwkuma007
Jul 14, 2009 12:02 am
Hi, haven't posted on the board for awhile but we just wanted to share some positive news. As a background our daughter was diagnosed at 8 months. She has FEVR...
42
Darryl Beales
darryl.beales
Jul 18, 2009 12:29 am
Hi, Glad that the patching helped. We had to patch our daughters right eye as well from about 4-5 1/2 whilst it didn't improve her vision as far as the eye...
44
Max Bodnar
maxkonji
Aug 11, 2009 1:40 am
Hi and thanks so much for the info, our daughter is 5 years old and suffers from FEVR Â It would be fantastic is something was discovered, thanks once again...
45
William Hassett
whassett
Aug 11, 2009 9:20 pm
Hi,      My nine year old daughter has FEVR which we discovered when she was 13 months old. I am not a retinologist but I highly recommend you get a...
46
Jane Ann Young
young1_fevr
Sep 9, 2009 7:17 pm
Hi, I can answer your question about your eyes not looking like they are looking straight. I hated this problem too. When you have FEVR, over time it drags...
47
chanelc
chanelbellea
Feb 1, 2010 9:02 pm
Hi, My name is Chanel and I am in Michigan with Dr. Trese and my 5 month old daughter just had her 3rd surgery. All of this is extremely new to me, but I met...
48
Jane Ann Young
young1_fevr
Feb 1, 2010 10:43 pm
Chanel First, you are with the best doctor and team in the World. And I really mean the World. I have talked/E-mailed with doctors, FEVR patients, ...
49
Kuma
gwkuma007
Feb 2, 2010 4:50 am
Hi Chanel, Our daughter was diagnosed very early and had her first operation at 12 months. We were living in China at the time but were able to find a...
50
chanel connell
chanelbellea
Feb 3, 2010 7:07 pm
Thank you so much for taking the time to email me. Â My husband and I are scared to death and doing everything humanly possible to help our daughter. Â Do you...
51
chanel connell
chanelbellea
Feb 3, 2010 7:12 pm
Thank you so much for taking the time to email me about this condition. Â My husband and I have so many questions and realize that this condition is specific...
52
Kuma
gwkuma007
Feb 4, 2010 5:59 am
Hi Chanel, Sorry - I can't remember what kind of level - just that the prognosis was very poor. When she was about 2 1/2 the doctor was having a serious...
53
Max Bodnar
maxkonji
Feb 4, 2010 11:10 am
Hi Chanel  Jane is right in everything she said. I am the father of a five year old Layla who was diagnosed at age 2 months. We were devasted when we found...
54
trillianz1990
Feb 4, 2010 9:48 pm
Hi Chanel, I thought I'd share my story with you. I'm currently 19 years old and was diagnosed with FEVR when I was a baby. I have near to no vision in my left...
55
chanel connell
chanelbellea
Feb 4, 2010 10:15 pm
Luke I cannot tell you how much it means to me that you took the time to email your story. You have encouraged me more than you know. Â I am finding more and...
56
Jane Ann Young
young1_fevr
Feb 6, 2010 5:22 pm
Hi Meira and Dr. Tsilou. I know you are busy but when you get a chance could you answer Chanel's questions about FEVR (see Questions for NIH below). Could...
